The Mathews

The Mathews

Tuesday, December 21, 2010

Now weighing in at 15lbs!

Now weighing in at 15lbs.... Andy's 4 month checkup went well yesterday.

Here are his lates stats:
Weight - 15 lbs - 50th percentile (seriously... I thought he would be way higher - he weighs a ton!)
Height - 23" - 60th percentile (let's hope he's taking after Tom's genes here)
Head - 43 - 75th percentile (still on the same curve as his 2 month which is a good thing)

The doctor was pleased by Andy's leg movement, and she was shocked to see that he can roll in both directions (which is apparently early for his age). We now begin to add prune juice to his daily diet in hopes of keeping constipation at a minimum (that just sounds disgusting but after one dose of 5 day consitpation already - I'll do anything to help that little guy). The doctor is hoping that he will outgrow his spitting up in the next few months (for now we change burp cloths and bibs after nearly every feeding) since he isn't losing any weight.

The bummer of the appointment was discovering that once again Andy is following Robby's lead and has double ear infections! This is his second ear infection since he was born. Amoxicillin - here we come!

I also had her check Robby's ears as well since all three of us were there w/ stuffy noses and coughing. While he currently does not have an ear infection, one may be coming. For now, we battle the endless nights of hacking and coughing as I attempt to keep both boys upright (not that easy w/ Robby's restless body syndrome of tossing and turning).

I'm hoping that the New Year will bring us positive health updates for Andy, more sleep, and less ear infections!

Starting New Traditions

Making Christmas traditions is a bit harder than following them... this I discovered as we decided to try and make our own traditions this year instead of playing the insane game of running from one party to the next. Between work, doctor appointments, and attempting to lesson the ever growing laundry pile, we haven't had a ton of time to enjoy the holiday season. Now that Robby is nearly three (and has a memory of an adult - scratch that - a better memory than me), I'm trying to take time out of our crazy schedule to start our own traditions.
Making Christmas cookies was definitely a treat! I'm not quite sure which part he liked best... his precision cutting skills using the cookie cutter, smashing handfulls of sprinkles onto the frosting, or trying to shove an entire cookie into his mouth at once. You be the judge :)

Andy has taken a more laid back approach to Christmas this year; he figures next year will be his turn to find trouble.

We opted to not put up the 7 foot tree this year after watching Robby's love and obsession with "decorating" the smaller tree. The small white stepladder remains a fixture in our living room, as he works away, and the tree has never looked so .... lovely. (Can you believe that Tom seriously put this in the back ground of our family Christmas picture without fixing it? Oh well, it has character... I guess - see I'm working on letting things go.)

Yes, we have many things to be thankful this year. We have been blessed by two wonderful boys that bring smiles to our faces each and every day. Our family and friends have been so supportive. We both have jobs (and more importantly health insurance). So, as I attempt to make new traditions this year, I figure as long as we're together life couldn't be any better!
Merry Christmas to you from the Mathews!

Saturday, December 4, 2010

Raving Results from the Doctors

The doctors' results are in... both boys are doing wonderfully!
This week brought on my first full week of teaching (well - almost - I had to take off Thursday for Andy's doctor appointments). Both boys are adapting well to the early to bed and early to rise schedule. One thing is for sure - days truly fly by and so do the nights. Robby has started to wake at 5 am to spend time w/ me curled up in his blankies under the heat lamp in the bathroom while I get ready for work. While I wish he would keep sleeping, it is really cute and comforting to hear him suck on his passy and cuddle in the heat. We are two of a kind - we both love to be comfy, cozy :)

Here's the doctor info:
Robby's ENT said his ears look great & tonsils aren't that big, so he doesn't have to go back until spring! Let's hope this is an ear-infection-free winter! No word yet if his restless leg syndrome is better - poor little guy. He moves around so much during the night; he's constantly hitting one wall or another as he rolls.

Andy's first trip to the urologist went well. The doctor is new to the office, but he seems very knowledgeable & happy to answer any of our questions. Andy's kidneys look awesome - this is something we have to keep an eye on. Children w/ SB tend to develop bladder infection quite often & reflux can occur where the urine backs up into the kidneys. He has to have ultrasounds done of his kidneys every 3 months to ensure everything is okay. As long as bladder infections don't start occurring, this should be an easy appointment for us. There will be no way of knowing if he will be able to control his bladder / bowels until he is potty training age, so for now we can only assume the best!

Andy's PT (physical therapy) appointment at Mary Free Bed was an ordeal to say the least. They rescheduled twice and when I showed up at the scheduled time, the PT never showed up to do his evaluation. Staying calm was a bit difficult for me, but you all would have been proud as I calmly demanded that he still be evaluated since I took the day off of work w/ no pay to have the evaluation done. An hour & a half later, we got wonderful news. Andy is doing wonderfully. He's kicking his legs, maintaining good head control, beginning to roll over, and showing little need for intense therapy at this time. He will continue his weekly PT with Early On, but we do not have to go back to Mary Free Bed until March!

It truly is a time to be thankful at our house! We have wonderful boys that continue to amaze us daily. Robby has become an extreme Christmas tree decorator. We decided to let him decorate our mini tree this year. He's been working on it (literally) for two weeks now. Each day he asks for the step ladder, climbs it, proceeds to use his tools to drill, saw, and "fix" the tree. It now has bolts, nuts, pieces of play wood, tractors, and construction equipment all over it. However, if this free entertainment keeps up, I might just leave the tree up all year! This has been the best way to capture his attention I have found yet!

This week brings on another head ultrasound and neuro. appointment. We're praying for the best (shunt free), and we'll keep you posted!

Wednesday, November 24, 2010

Returning to the Work World

It's back to the real world - work world that is! The last couple of weeks have been filled with appointments and preperation for returning to work. While it is hard to leave the little guys to go to work each day, I have met another 125 or so soon to be brilliant 7th graders that need a little "Dawn love" in their lives ...aka. structure & laughter not to mention writing and grammar instruction! Work (and more importantly insurance) is a necessity for us; Andy's doctor bills keep coming in and we have far surpassed the $70,000 mark at this point - mind you he is now 3 months old! It's crazy to think of what we would do w/out insurance.

Thank God for awesome family that will help watch the boys while Tom and I are at work. We love you!

Robby is off to a ENT (ear, nose, and throat) appointment today. We'll see what they say about his tonsils and annoids; although between him & Tom I think I'm about to be drowned out by snoring at night. Not a good thing!

Andy's had another renal ultrasound & VCUG (kindey ultrasound & bladdar test) done last week. Apparently he was the first person to use DeVos' new machine for the VCUG test, so they took a bit longer than usual to do while the person learned how to use the equipment. He continued to flirt the entire time though; I was more tired than him after 5 hours of sitting in the hospital. Quick results show that his kidneys look good & his bladdar is nice and smooth. It also showed that he didn't empty his bladdar the entire way which could be a one-time thing or that he doesn't have much sensation to know that his bladdar wasn't completely empty. We'll find out more next week when we meet his urologist.

I've also decided that as hard as I try to maintain order & control the medical world is out to upset the apple cart each time. With going back to work, I now have to arrange for Andy's PT each week and arrange time off for all his doctor's appointments. School has been great about saying just go, but that also means sub. plans, leaving early, and no pay! Once I get everything all set for an appointment, the offices will call and cancel and reschedule at wierd times w/out even asking if that time slot will work. I just want to scream, "Are you serious? Do you realize that your faulty planning is no going to cost my family an entire day's worth of pay?" But they don't care. You simply go when they say b/c that is what Andy needs, and you know that you will do whatever it takes to help him. Talk about frustrating!

So, it's Thanksgiving break, and I'm truly thankful that our entire family is together to celebrate. We are blessed beyond our wildest dreams. That is what matters in the long run!

Saturday, November 6, 2010

Rooooaaaarrrrrr & Meow!

Happy Halloween! Who knew a cat & dinosaur could be friends? Both boys had a fun-filled weekend at the Halloween mass at church & trick or treating w/ family. Robby's been busy "fixing" things and "harvesting" crops! I think we have seen every tractor, combine, and grain bin throughout all of Alpine & Marne. Here he's harvesting our squash collection! He definitely makes dad proud (my other farmer).
I hope we're on the road to recovery w/ Andy's ear infection - poor guy! His latest head ultrasound came back "great" as the neurosurgeon said (this after 1 1/2 hour wait - it is kind of satisfying that they know me enough in that office that when I walk in, they appologize for the wait before I even sit down. I actually asked his secretary if they overbook too often or does he just not know how to read a clock. While I explained it was "fine" again this time, I start back to work in two weeks & it will no longer be "fine" once I am taking time off to see him for less than 5 minutes). We'll see what happens in December.

Here's Andy making his mom proud. He has such good head control; he can now sit in the Bumbo seat for short periods of time. He likes to grab the rings on the tray. Tom swore we would throw this seat out after Robby flipped off a chair in it (go figure, my child that can't sit still for 30 seconds), but I'm glad we kept it! Andy loves sitting up! Andy's PT is going really well. He continues to kick both legs and rocks from side to side. Hopefully our lucky streak continues through Nov. Andy has another renal ultrasound and VCUG test (bladder & kidneys) done before Thanksgiving. While most kids w/ SB are unable to control their bladder & bowels, Andy might just prove them wrong - he has so far!

Tuesday, October 26, 2010

Hopefully NOT a Sequel!

I knew I was about to jinx it when I said Andy slept through the night. It came and went so quickly it might as well have been a blink, but it really wasn't his fault though. All three boys, including Tom, were sick this past week. This left me to take care of each of them - not exactly a highpoint! Anyway, we broke the swing back in after Robby's endless nights of trying to get him to sleep by placing Andy in it. After a week of congestion, green-snotty nose, and throwing his bottle back up right after drinking it - the answer was clear - Andy has his 1st ear infection:( I so hope we are not re-living history here. Robby had ear-infections terribly for a year before they finally put tubes in. I don't want Andy to have either (the infections nor the tubes). Amoxicillin once again holds a sacred spot in our refridgerator. Hopefully he feels better soon!

Tuesday, October 19, 2010

A Sleep-full Night

Last night marked the first night that Andy slept through the entire night!!! Some of you might not understand how great this is, but Robby has only slept through the entire night about 10 times since he was born, so we were estatic when it happened! Let's hope it continues on.

Fall has brought many activities for our family. Here is a picture of Robby and his buddy, Nolan, becoming "Future Farmers" on our hayride.
Tom and I took Robby and Andy on their first train ride - The Coopersville / Marne Pumpkin Train. Both boys had a great time.

Fall also brings beautiful leaves - a whole lot of them! Trees are great for shade and beauty, but Robby likes them best when they produce a huge pile for him to jump in.

This week also marked the start of the dreaded "shots". I'm happy to report that Andy felt his first vaccine shots at his 2 month check-up. It's a little odd to think that one should be happy he feels pain, but we are! Robby, also had his share of tears w/ his flu shot. Oh the joy of walking out of the doctor's office w/ crying children; at least Robby's watermellon sucker helped!

Images of Robby's & Andy's Brotherly Love:
* Robby decided to wash Andy's bottles in the sink. When I discovered that he had crawled on top of the counter & added soap to a near overflowing sink of water, I could only laugh at the sight of every bottle surrounded in foam.
* Jealous of Andy's need for attention at feeding time, Robby has tried to learn the art of spitting. Thank goodness he can't figure it out yet, so the end result is he kisses Andy unhappily.
* Convinced that every person needs a set of tools, Robby laid out a set on Andy's swing for him to play with.

Tuesday, October 5, 2010

Future Fire Fighter

Robby absolutely loved the Open House at the Fire Station earlier this week! Fire trucks, tools, and a chance to hold the hose - what a treat! I really wanted to warn everyone while he was holding the hose. Usually he turns and starts spraying everyone who is nearby :)
Look at me :) What a cutie! Who knows, he may be a future fire fighter if building John Deere tractors doesn't work out!
Onto other news... Robby's sleeping is varying. At this point we tried eliminating his nap during the day in hopes he would go to bed earlier. While this has worked (yeah!), it has not gotten rid of him thrashing around nor talking/crying/waking up in the night. The battle continues. Right now I am hoping that we figure this out before I go back to work. And yes, Andy does sleep longer and better than Robby :)
Andy had another head ultrasound today. The neurologist said his head size was in the 75% still (good), but his ventricles (used for draining fluid) have enlarged a little. This could mean that fluid might be building up or not draining correctly. If they increase too much, Andy might need a shunt to help drain the fluid. At this point, the doctor wants to just monitor them, so we will go back in another month. I figure they can't be too bad since we don't have to see him sooner. Some days Andy's head is soft (the soft spot is indented like babies are supposed to have), so we don't think there is too much pressure being put on the brain. Really we're just playing the waiting game and hoping/praying for the best.

Thursday, September 30, 2010

Keeping My Chin Up!

Today marked day one of therapy, and Andy did great! Andy's modeling how well he can hold his head up for a 6 week old. No new appointments for this week, so we decided to take it easy and sit back and relax. The kitchen is nearly finished, so construction has slowed down a bit. Andy has become immune to construction noise, and Robby has learned many new talents not mention an increased vocabulary. He can now tell you how to install windows, varnish, measure cabinets, order granite, and install plumbing. I don't think all of the workers knew what they were getting into when they bid out our house; our secret weapon was Robby, aka.. Straw Boss.
Sometimes we just need to lighten the mood. Here's a photo of Andy giving us a quick smile!
Next week Andy has another head ultrasound & visit to the neurosurgeon. We're hoping his head hasn't grown to quickly and that the fluid is not collecting in his brain. We're still working on Robby's sleeping problems - right now Andy sleeps more than him in a night. Keep us in your thoughts and prayers!

Tuesday, September 28, 2010

IEP - A Whole New Ball Game

It's a little different sitting on the other side of the table during an IEP (Individual Education Plan). As a teacher, I've attended a few IEP's before mainly as the gen. ed. participant, but it's a whole different ball game when it's your own child being evaluated. Knowing that Andy would have to fail a portion of the evaluation in order to qualify for therapy w/ Early On, you have mixed emotions for when the evaluators arrive at your door: he needs therapy, but you don't want to hear all the things that are wrong with your child. So I held it together and resisted the urge to yell out, "No, you're wrong he can do that. He does turn his head & hold it up! He can track an object really well!" Instead, I bit my lip and let them say all the things that Andy isn't doing well... why don't they say what he is doing well??

Unlike all of his other appointments, Early On tests him on what he is currently doing. So as they walked out the door, I was finally able to let the tears fall. We knew Andy would have difficulty with his legs - this we expected, and I guess we should be happy that he didn't pass his evaluation b/c that is afterall how he will receive therapy. If he passed everything, he wouldn't qualify for the physical therapy he needs. So the tears can be that of sadness and thankfulness, and I'm positive that Andy will prove them wrong in the weeks to come; in fact, I'm sure he will surpass everyone's expectations of him & what he is able to do.

Friday, September 17, 2010

Double Blessings

Boy are we blessed - double blessed that is with both boys!

Today marks one month from Andy's birth and he has received positive praise from every appointment thus far. We visited MFB Clinic today, and Andy was a super star! He barely opened an eye ball for the many different people that came in the room to visit him. It was almost funny to think that he might be saying, "Ha - watch me now; I'll show you what I can do"! For now we have to work on stretching his legs/toes so that any potential nerve endings can begin work once they become untramatized. When considering all the other problems Andy could have, we need to remember how fortunate we really are.

Robby continues to make me laugh and be amazed at how quickly children do learn. He has absorbed so much new vocabulary from the construction on the house that I'm sure he could remodel any house for that matter. He now speaks of measuring new cabinets, varnishing the windows, picking out granite, and laying tile w/ mud (his current favorite - probably due to the mud reference). It's hard to say what he likes more tractors or tools!

Hilarious or not-so-hilarious moments of the week:
* Andy peeing through 4 outfits in one day.
* Robby helping Andy get his passy back in his mouth even when he didn't want it.
*Robby asking the plumber for the 20th time in one day, "Watcha doing plumber guy?"
* Robby emptying 1/3 cup of dish soap on the carpet floor b/c he thought it was dirty. How do you get dish soap out of carpet? You can't add water b/c it just keeps on bubbling!!!!
* A 2 1/2 year old yelling no about 15 times in a row (as if that would make you change your mind & give in).

Yes, we truly are blessed by our boys and the many people who have been praying for us!

Thursday, September 9, 2010

Great News

Test Results Are In - We're Good! Andy had another head ultrasound today, and it came back "fabulous" as his neurosurgeon said. We're shunt free (for the time being). His head has grown 2 cm since he was born, but he's still in line w/ the 75% he was born at, so for now, we don't have to go back to see them for a month - awesome news!

Andy was also cleared of "limited back time". When we left the hospital, he could only be placed on his back for feedings & short car rides. I was going nuts having been stuck inside for the last three weeks, so I'm really excited to get both of the boys outside for a walk. We are now able to hold Andy in any position (not just his side or belly). Our only limitation is that he can't be submerged in the bath tub yet; we'll take it!

Overall, Andy is surprising everyone with how good the news is. We are definitely taking those good thoughts to heart and praying that they continue down that path. We are scheduled to meet w/ Early On to see if he qualifies for services in a couple of weeks, and I do hope he does. Andy is going to need physical therapy to strengthen his calf muscles & other leg muscles for standing and walking later on. We're hoping that the hospital diagnosis speeds up this process and he can start any therapy he needs sooner vs. later.

So I went off again... in typical Dawn style. At the end of Andy's evaluation at Mary Free Bed, I simply asked when we would be returning. It all went down hill from there. Apparently MFB is way over booked (Andy is 132 baby with SB), and they don't have enough capable staff to handle those numbers. Normally, each child w/ SB visits the MFB clinic where they see a ton of different doctors/therapists all in the same visit; thus, cutting down on the number of outside appointments the parents have to make to see each person individually. Because of the high numbers, their solution to the problem is to have a "virtual" clinic where patients with low needs / high function (such as Andy) can see each doctor individually and the doctor's report will be accessible to the other doctors via the computer network. This will be true for other patients that are high functioning and also live close to GR. THIS IS WHERE I LOST IT! I told the doctor that that was not acceptable. Just because of Andy's current success & close proximity to MFB does not mean he shouldn't receive the same services as other individuals. At the same time, the increased appointments were going to be a huge problem w/ me b/c of taking time off of work. Needless to say, he wasn't expecting a tongue-lashing. In fact, I don't think many of the doctors are used to being talked back to or challenged. His simple reply was that unfortunately, most of the time available by the doctors is given to the "not so good parents". Tom was about to tell me to calm down when I cut him off and told him under no circumstances was our child going to suffer simply b/c some other parent couldn't get their act together. It will be interesting to see where we go from here. We have to go back to MFB later this month, and trust me I'll be armed and ready to fight if needed.

Overall, though, we are ecstatic about the good news! Robby goes back to the sleep clinic tomorrow, and we hope it continues there as well. Our fingers are crossed that maybe some day we will be able to have everyone in our house sleep through the night.

Tuesday, September 7, 2010

3 Weeks Old Today!

Andy is 3 weeks old today! Last week is merely a whirlwind of time as we adjusted to being home, trying to unpack, and new schedules and construction work on the house. Today also marks the first day of school (which is a little bitter sweet for me); I miss seeing the kids at school, but it is nice not to have to get up at 4:45 each day (oh wait, I'm still doing that).
Andy's doing wonderfully. Today we had his initial evaluation at Mary Free Bed. Dr. Rush (his primary doctor there) said that although he was referred to as a L-3 mylo baby, he has some S-1 function! In other words, he can move his hips, knees, and some ankle/foot movements. He thinks that Andy will definitely need braces once he is able to pull himself up and begin walking, but that Andy should be able to walk without crutches in his adult life! This is awesome news!

Just like Robby, this is Andy's fighting stance. For some reason, my kids both like to look like they are going to deck you when they get their picture taken. Oh well, a little determination never hurt anyone!
Later this week we go in for another head ultrasound & neuro. check. Andy has gained two pounds in the last two weeks (now weighing in at 9 lbs. 4.5 oz) and measures at 22 inches long. His head size has grown 2 cm. as well (this has a bit worried, but we'll have to see what the neurosurgeon thinks on Thursday). For now, my big boy eats nearly 4 oz every 3-4 hours - this equates to a ton of milk!
Robby is adjusting well. The rain has not helped us b/c he has been caged inside, but thanks to family they have entertained him well over the last couple of weeks. He was extremely happy to receive a present from Andy - a bubble blowing lawn mower (hidden agenda - maybe it would tire him out a bit - so far it's not working). Robby revisits the sleep clinic on Friday afternoon - positive thinking here.
Overall, it's been a busy week, and it will only become busier with appointments. So for now, I'll miss school, but my boys need me here. Keep the positive prayers coming - they are really working!

Monday, August 30, 2010

It's Discharge Day

Today is discharge day! Surprise... we get to take Andy home today, and what a day it has been. Andy had to have four different tests/procedures done today: bladder test, kidney test (both which came back normal), circumcision, and vaccine shot. He's totally wiped-out, but that didn't stop him from chugging down 100 mL of milk. Boy can this kid eat! Now we just have to wait for paperwork to get cleared, and we get to go home for the first time as a family since Aug. 17th.

Appointments are already made for this week and next (3 in one day); it's only the start of a long journey ahead of us, but we're willing to do anything to let Andy live the fullest life possible.

Thanks for all the positive thoughts and prayers; we couldn't have made it this far without your help.

Friday, August 27, 2010

It Won't Be Long Now!

It shouldn't be too much longer!!! Andy's head ultrasound was unchanged - although his ventricles in his head are "big" (filled with fluid), there hasn't been any change since his birth. This is awesome news because once his back was closed during surgery, the doctors have to watch for head enlargement due to spinal fluid gathering in the brain. At this point they don't think he will need a shunt, and we remain hopeful that this lasts for a long time. Realistically though, we will be monitoring his head / spinal fluid for a long time.

The neurosurgeons couldn't be happier about his back as well. (In fact, the neurosurgeon couldn't pat himself any harder on the back about it). Since Andy's opening was in the shape of a circle, the doctor had to do quite a bit of work to get a straight line closure. Honestly though, it looks awesome (as far as scars are concerned).

Andy is allowed to be on his back for short periods of time (mainly feedings), but this amount should increase over time. His next big day is Monday. On Monday he will have a bladder and kidney test to determine if both are working well. Many SB kids have issues with these organs. With any luck (and many prayers) he will be allowed to come home next Tuesday or so.

We would like to thank all of our friends and family for the positive thoughts and prayers that you have provided. Obviously they are working because Andy is doing so well! Please keep them coming! Andy's growth and abilities will be determined over time, but we know that he will make great strides in the years ahead.

Tuesday, August 24, 2010

Busy Beyond Belief!

Hello NIM 8! Andy was moved to NIM last night at 3:00 a.m. He's officially out of intensive care - no more tubes, pokes, or excessive wires. For now he simply has to be hooked up to a few monitors while his back continues to heal.

The neurosurgeons are happy with how his back is healing and they hope he can be on his back later this week. Once he is able to be on his back he will have to have a bladder and kidney test to see how much control he has of these organs.

Andy is holding his own as far as spinal fluid goes. Once his back was closed, we had / have to watch for swelling of his head. This type of swelling would indicate that the fluid was collecting in his brain - too much fluid results in too much pressure on the brain. If this occurs, Andy will need a shunt. For now the doctors are continuing to watch him closely. He will have a head ultrasound on Thursday to see if the ventricles are increasing in his head where the fluid typically collects. We pray that they remain small and he goes shunt free!

Andy is thriving! He is one cute kid - now that his swelling is down from the surgery. His first pictures all showed his puffyness from the surgery and red cheeks from the tape that held on his tubes. Now we can see the true Andy!

We met his physical therapist today and learned a few stretches that will help in Andy's recovery. So far they have seen muscle strength in his hips, knees, and a little in his ankles. His right leg is stronger than his left, but his left can currently feel more pain. All of these can change day to day, but we remain optamistic regardless - he'll definitely need therapy this we are sure of.

On to Robby news! Our sweet boy continues to win the hearts of all the nurses at the hospital - they seriously stop by Andy's bed and comment on his photo (although they say the same thing about Andy as well).

Robby's consult at the Ears, Nose, and Throat doctor was bitter-sweet. His doctor didn't think the recommendation to remove his annoids and tonsills should be done. There is no evidence that it will truly help Robby sleep, so now Tom and I have to decide if we have the surgery or not. Do we listen to one specialist or the other???

Robby Quotes of the week - I thought they would make you smile!

- "Mommy, don't put staples in your belly - that's just silly!"

- "I'm pumping too Mommy!"

- "Andy can't have my tractor; he only gets milk."

- "I love Andy - he's a cool dude!"

Here are some photos - I know - it's been forever, but we've been crazy busy!

Sunday, August 22, 2010

Andy's Thriving

No News is Good News! We have been so busy lately that I haven't had time to post, but it is all because of good news :)

Andy has been healing well. He is able to be on his side or belly which allows him to be nursed and fed (thus the huge amount of time needed). He has increased his feedings from the beginning mark of 1 oz (30 mL) to 60-70 mL which is awesome news. Unfortunately his weight has not increased so much with it; the doctors are watching his salt numbers to make sure he is getting enough fluids.

Friday they took out his catheter and IV, so he is wire free except for his heart, oxygen, and heat monitors. Andy is loving every moment of that; he hates laying still and manages to wiggle his way off his pillows quite frequently.

The closure on his back looks good. The redness and purple is slowly decreasing, but they are watching it closely for bruising and drainage.

I was discharged on Friday night and am trying to make as fast of a recovery as possible. Right now Tom and I are trying to learn how to balance playing with Robby, pumping every 2-3 hours, and getting back into regular house life with driving to the hospital and seeing Andy. It hasn't been the easiest thing in the world, but I'm sure it will get better. For now we are savoring every minute of spending time with each of them.

Pictures to follow - once I find the camera :)

Thursday, August 19, 2010

Day 3 - It's Been a Good Day!
Andy is two days old today, and he has made great gains already! His surgery went well yesterday, and the neurosurgeon was able to close his opening in one straight line at the bottom of his back. He was drugged up most of yesterday and this morning. Overall, the doctors were happy with how the surgery went though.

Today the doctors took him off the ventilator, and he didn't even cry during the process. His head has grown a cm, but they are not too worried about it. We are trying to wait and see if his body will absorb the fluid by itself before we look into a shunt. It doesn't help that he looks like Bib, the Michellin Man, either from his surgery. His body is retaining the excess fluid right now, but hopefully he will pee that off within the next couple of days.

For now, Andy has to remain on his belly while his back heals. He was starting to squirm a bit and went to town on his passy once the vent was out. The good news is that he can finally eat; he hasn't been able to have any food since he was born! So, the plan is to go down for his first feeding (1 oz) at 4pm today, and they will let him eat every 3 hours or so.

Andy has been a hit with the visitors. Both sets of grandparents have fallen in love with him, and who wouldn't? Robby thinks that he is pretty neat as well; in fact, yesterday he told Tom that he would take care of Andy for us. Robby informed him, "don't worry dad, I'll take him to emergency if he needs to."

We are truly blessed! Thanks for all the prayers and positive thoughts - Dawn and Tom

Wednesday, August 18, 2010

Courageous One!

Courageous One - His name fits him well! Andrew Thomas Mathews was born on Aug. 17th, 2010 at 9:56 a.m. Weighing 7 lbs. 3oz and 19 inches long, he surpassed his older brother by a bit. Doctors were happy with his heart beat, color, and vigorous attitude!

The bubble on Andy's back had ruptured in the womb leaving his back wound open. It's a round circle measuring about 5 cm by 5 cm on the lower part of his back (L3). His feet look good at this point as well (they were concerned that one might be clubbed - curved inward)! The neurosurgeon said his hipflexers (think of where your legs are connected to your hips) looked good, and his toes had movement. His ankles were weak which is typical of a L3 baby - this could lead to difficulty in going down stairs - only time will tell.

Right now Andy's head is measuring at the 50 percentile - awesome news! Once the back is closed we will have to wait and see if fluid begins to collect.

Last night Robby met his baby brother and won over all the nurses in NICU - the boy sure can gather a crowd of women, and I'm sure Andy is quick to follow. He's the only boy in his nursery, and the only one to sleep through the night - all the girls were crying and fussing. Needless to say, the nurses were fighting over him this morning!

Right now Andy is in surgery for back closure. It's a 4-6 hour process, and Tom and I are awaiting news from the neurosurgeon and plastic surgeon. Please keep us in your thoughts and prayers! I'll have to have Tom download some pictures for you soon!

Thursday, August 12, 2010

5 More Days Until the Big Debut!

5 More Days :) Today marks the last day of appointments before the baby arrives.

The baby read my mind and at least gave me the satisfaction of getting my lovely to-do-lists done before he/she decided to bless us with his/her pressence. We finished Robby's big-boy bedroom this week (except for the cute accessories - Tom said they were not a necessity, but I can't wait to paint his name and shelves so that I can decorate the walls). The nursery is back in order (we kept it the same as Robby's - blue, green, yellow - a safe bet). Kitchen cabinets are being installed as I type, and the countertop guys came and measured yesterday. The tile is supposed to be started on Monday, and I'm confident that all will be neatly finished before I return home from the hospital - okay, probably not.

Other cute news - one of my cousins is also expecting a child this month. She just found out that if the baby doesn't decide to come this weekend, she will be induced on Tuesday, Aug. 17th as well. Who knows - the two might share the same birthday!

The sleep results are in! Robby's sleep clinic called this afternoon and said he has a mild case of upstructed sleep apena (not a big surprise since both grandpas have this). They are recommending he have his tonsils and annoids taken out as a way of increasing his oxygen levels at night. I scheduled an appointment w/ the Ears, Nose, and Throat Specialist (same one that did his tubes), so we shall see what that consult brings.

So, if all goes well and baby decides to stay put, we will head into the hospital on Tuesday morning. Tom will attend the C-section with me & head directly to NICU with the baby once he/she is born. I'll have to go to recovery for a few hours before I will be allowed to be wheeled by NICU on the way to my room. Since visitors will not be allowed to enter NICU without us, Tom will start the phone tree to our family and friends once the baby is stable to let you know he/she has made his/her debut. The baby's first surgery is scheduled for the 18th, and we will let you know the results afterwards as well.

Friday, August 6, 2010

11 Days and Counting!

11 days to go and counting! Baby Mathews has been agreeable lately and has passed all of his/her recent tests, so (fingers crossed) he/she will hopefully make it to the 17th. Yesterday I had three different appointments, and at this point there is still enough fluid for the baby to stay in the womb for a couple more weeks. The doctors were concerned about a lack of fluid in earlier visits. The Non-stress test went well too - we definitely have an active one. So, unless the baby decides otherwise, we are all set for another week until our last set of appointments before the baby's arrival.

Robby caught a virus & maintains a slight fever (we're working on a week now). His hacking cough is enough to bring you to tears as he gasps for air at night from coughing so bad. All the doctors can give him though is Claritin & Benedryl. He's been a good sport about it, but you can tell he doesn't feel like himself.

On to construction news - Robby's room will receive its final coat of paint today - yeah! Then everything can be put back into it. The new doors & windows look great now that the painter is done. We begin ripping out kitchen cupboards today - another reason to hope the baby doesn't arrive for a few more weeks.

Friday, July 23, 2010

Mommy's Little Mummy

Robby and I had a sleep over at Spectrum on Wednesday night, and what a night it was! In order to fully appreciate this story you have to remember that Robby doesn't sit still for more than 2 minutes at a time (including in his sleep). Also remember that he rarely falls asleep until about 10:30 - 11:00pm and thrashes around all night, waking several times.

After arriving at the hospital, the nurse (bless her heart) hooked Robby up to at least 25 different monitor cables, and then wrapped his head w/ bandages to prevent him from taking them out. Seriously, he looked awful & words won't do the image justice. He became my little mummy. I took a couple pictures of him on my phone, but I can't figure out how to load them onto the computer yet. Finishing around 8:00, she says, "Okay now it's time to go to sleep." Sleep??? At 8, are you serious? To make the situation better, he was tied down to cables w/ about a foot of "leash" room, or so I called it - meaning he couldn't get up and play or run around. Hmm? Needless to say I had to get creative in entertaining him for the next 2 & 1/2 hours until he finally gave in and fell asleep. The hardest part for him was the nose tubes; it made it difficult for him to have his passy.

The rest of the night went TERRIBLE - which was a good thing. At least the doctors can now see that he doesn't sleep, trashes around all night (he literally pulled off the cables at least 4 times in his sleep - making the nurse come back in to reconnect them), woke up screaming, and made mom sleep at the foot of the twin size bed once again. I'd say it was a successful sleep study that I really don't want to do again for a long time. Real results won't be done for 5-6 weeks.

The doctors did call later in the day to say that he has an iron deficiency that they think might be adding to his restless leg symptoms. I'm hoping for a quick fix here w/ a supplement - keep your fingers crossed.

Onto the other child: Friday's visits both went well. The NST came back great - super active child that isn't under any stress - got to be like his father. The MMPC appointment was routine as well.

Tonight we hope to make it to the Berlin Fair (Robby's sweet reward for the sleep clinic). It ought to be a pretty picture - me wobbling along in hot, humid, 90 degree weather, but I know both him and his dad will love it! John Deere tractors and stinky animals here we come!

Wednesday, July 21, 2010

Pokes and Monitors

Robby's sleep appointment led to new discoveries. First, the doctor found a mild heart murmur. Apparently there are two types of murmurs: innocent & non-innocent. Innocent murmurs are caused by blood pumping through the heart at a quick rate of speed causing something in the chamber to rattle. These murmurs usually appear when the child has a fever or is sick. The non-innocent murmurs can be caused by numerous things including a hole in the heart, weak valve, etc. Obviously these are worse. Robby's is a mild murmur meaning in the middle. It is in the location of an innocent murmur, but it is louder than normal. Apparently he has had it all his life (makes me wonder why the pediatrician hasn't located yet when it took this doctor less than a minute). At this point he is not worried about it & we just have to be aware of it. Most kids outgrow murmurs by the time they are 6 or 7.

The doctor is also checking on his larger tonsils (sp?) as a possible side effect for allergies. This could be one reason for him having trouble sleeping. We also had a blood work up done (poor kid has veins like me and his grandpa - they don't exist - they had to check both arms & try a couple of times before they could get a good poke). The best line for the day, "I'm crying mama. I'm crying. It's pokey!" He did walk away w/ a Bob the Builder Sticker and camo bandaid though. The doctor is checking for restless leg syndrome due to his thrashing around at night.

Now to my proud moment - sometimes it pays off to manipulate a situation. I totally played the highrisk pregnancy card to get him into a sleep study, but I don't care. The earliest appointment they had was for January! Can you believe that!!! I almost hit the floor when they told me, so I played the sympathy card and took a cancelation spot for tonight! Yup, Robby and I will be hooked up to multiple cords and monitors tonight - while this will be tricky to not have him pull them off at least we will get results (apparently in 5-6 weeks).

My Mary Free Bed appointment went well. I met w/ Dr. Rush who seems straight forward but nice. He went through what we can expect from the clinic and average case senerios for babies w/ L-3 openings. While statistics are not promising for walking (in an efficient pace / mode of transportation) or for bladder/bowel control, we remain optimistic and will do whatever is necessary for the fullest potential of our child. Dr. Rush said to expect many doctor appointments in the upcoming year; thank God for an understanding work place that is going to let me take days off (unpaid, but won't hold it against me) to be there. He also said that the long wait to get into Mary Free Bed is due to the lack of pediatrician specialists that they have. This was a bit surprising when you think of our Michigan Street Medical Mile, but apparently they are overbooked to an insane number (one doctor doing the work of 4). The best part of the meeting was scheduling the baby's evaluation appointments for the clinic which are hard to get into to, so as long as we don't have to stay too long at NICU, the baby will be seen in September by a team of specialists. Now I just have weekly NST & MMPC appointments until the baby comes.

On to construction news! Robby's room had to take a back seat while Tom demolished the downstairs bathroom shower (imagine porclein tile shattering everywhere). We also had new doors put in (I made sure dead-bolts were on all of them in hopes of keeping Robby in since he knows how to open all doors even w/ safety locks/handles), and the painter is working on the staining/painting now. My house feels like a disaster zone, but I guess I have to let that go. Robby can't wait to see the tractors & animals at the Berlin fair, so that should be our high point of the week and his reward for the sleep study!

Saturday, July 17, 2010

4 Weeks & 3 Days to Go

4 weeks & 3 days to go... unless the baby decides to come early! I've had contractions for the last 2 weeks, but none of the doctors seem to think this is that big of a deal. So, for now we just keep plugging away at projects. Robby's room is making progress; all we need is primer, paint, carpet, & assembly and we'll be all set. Meanwhile, the baby's room is packed full of everything else while we work on the spare bedroom. I wish I could do more; I'm not used to sitting back and getting winded by simply vacumming - I'll just blame it on the heat for now. Nothing like waiting to the last minute to do jobs you don't like huh?

This week I had 3 different doctors appointments. I wish I felt reassured or uplifted by them, but they basically made me depressed. I can't wait until the baby is actually here.

We met the other nuerosurgeron who is supposed to close the baby's back (first one is supposed to be on vacation when the baby is born). While he has a bit more persoanality than the first, he is that much more cocky (and we all know how well that goes over w/ me). Great - at least they are good at what they do though, and that is all that matters.

The other 2 checkups were routine, and so was our baby. Yup, it was still sitting BREECH - AGAIN! Ugh, talk about stubborn child (wouldn't know where it gets that from). While the postion of the child is fine, it simply means the doctors can't get good pictures of the baby's opening. They did confirm that our baby is in the 50 percentile of weight at 5 lbs. & 5 oz, and the ventricles in the baby's head have not increased (measuring about 10 - at the high side of normal). They were happy with the cerebellum (sp?) as well especially since the size of the opening is so large. The NST (non-stress test) came back great indicating that we indeed have a very active child - which could explain why I don't sleep much at night when combined w/ Robby's lack of sleep as well.

So while the results were consistent with the last ones, I guess the reality of having a child w/ SB is finally sitting in. Next week I have Robby's sleep consult, and I am so excited!! Maybe they will be able to find a magical cure that will help him sleep through the night. I will also be meeting w/ Mary Free Bed in hopes of speeding up the baby's wait time to get into the clinic for therapy once it is born.

Thursday, July 8, 2010

Robby - My Outdoor Boy!

He's a boy with simple pleasures: tools & tractors! Give this boy a pile of sand and he will be content for ages - until you try and take him inside that is. Thank goodness the weather has been cooperative! It definitely has been a great year for enjoying the outside. Can't wait to see him at harvest time :)

Wednesday, June 30, 2010

Throwing Out the Calendar

Some people were born unorganized; I, however, was not! It continues to amaze me how people can be spontanous or live without a planner or calendar - I'd be lost without my color-coded planner and daily to-do-lists. Needless to say it sends me in another world when people mess with my "plan". If this baby teaches me at least one thing it will simply be that I am no longer in charge of or should plan on anything.

Today's dr. appt. went well (hidden meaning for yup you gained some more weight), and the baby's heartbeat was around 150. So when I asked if we were all set with the C-Section date I was a bit surprised to hear that our nuerosurgeon was going to be gone on vacation during that time. With red flags going off in my head, they quickly told me that another surgeon would be doing the back procedure and possible shunt surgery if needed. My second surprise was to find out the back closure will not be done until the day after the surgery (still have to find out why - new consult already scheduled). 3rd surprise - no operation rooms are available on the day that they want to do the delivery - they called us later to tell us they bumped someone else out & made a spot. At this point I just gave up! So as of now, (no longer in ink - maybe penciled in) the baby is scheduled to be delivered on Aug. 17th, and the back surgery is scheduled for the 18th - unless something (more than likely) comes up.

On to better news! Robby FINALLY received a consult appointment with the sleep clinic. It still takes him about 2 hours to go to sleep & he wakes up at least 3-4 times a night. While his talking in his sleep can be funny at times, his sleep terrors aren't. We've been praying for an appointment since April, and we finally have one scheduled for late July. A sleep study won't be scheduled until Nov. (first available at the earliest), but I'm positive that at least we are moving in the right direction.

Other good news - our baby has been entered into a pilot program with Mary Free Bed where they meet the parents of kids w/ SB before the child is born. Hopefully this will get us off to a good start & we can begin scheduling therapy quickly after the baby is born.

Today I went to visit another baby w/ SB in NICU! Lewis is so cute, and we send our thoughts and prayers for him & his family for a speedy recovery. It's wierd to think that we will be there in about 2 months or less. The other families we have meet w/ children w/ SB have been really helpful - thanks so much!

So for now I better hang onto the planner & just get used to the changes and cancelations that are headed our way. If I truly did throw it out, I would forget everything!

Saturday, June 19, 2010

A Bang-up Day

Friday was off to a great start when some idiot hit me by Target on Center Dr. off of Alpine, and then he actually took off (not like Alpine wasn't busy and a ton of other people saw it happen)! To make matters worse I was supposed to be at MFM in twenty minutes. Clearly I have no control over anything anymore!

The baby decided to once again show us who was in charge as it sat breech AGAIN! So, no clear pictures of the baby's opening which I was hoping for. The baby is gaining weight (3 lbs. & 8 oz) and is at the 57%. Right now it is right on schedule with the due date of Aug. 27. The doctor said the baby's hydrocephalus looks good. A sac has also developed on the baby's back which is normal for babies with SB.

We sat through our first non-stress test - good thing it only monitors the baby's stress not mom's, and he/she passed with flying colors. It was moving all over the place.

On to MMPC - here the doctor said the baby's heartbeat was good (about 140). I also received no sympathy as the doctor and Tom hit it off by making fun of me :) Got to love it - that's okay I got my jabs in as well. They are trying to schedule our C-section for 39 weeks, but we have to wait and see if the neurosurgeon & plastic surgeon are available on that date.

Later I ended up at the police department to file an accident report from earlier in the day. I was pleased to find out that the guy actually called in to report the accident. Now we just have to wait for the insurance company to go after him for the deductible.

All in all, not a lot of new news, but that's okay. Baby's doing well and we are off for some much needed vacation.

Thursday, June 17, 2010

A Whirlwind of News

April was a whirlwind of dates and news for us. In between Tom's frequent trips to MN for work and my track meets and practices, we took Robby with us to see the ultrasound of the new baby! It was one week later that we received news that the baby's pictures showed some areas of concern.

The second ultrasound and amnio test proved positive that the baby indeed had spina bifida - an opening in the baby's back which did not form over the spine. The opening is created within the first month of the baby developing. An average person's body is formed similarly to a zipper over the spine. For some reason, our baby's back did not close entirely. We left Maternal Fetal Medicine with heavy hearts but reassurance that everything would be okay.

May brought us more appointments with MFM, a nuerologist, and neo-natal doctors along with my monthly checks on the baby at MMPC. Once again our baby proved to be a true combination of Mathews and McWilliams as he/she stubbornly refused to let us see its back - it was sitting breech with its back against the wall. An hour and a half later (I refused to leave until they would tell us where the opening was) and two doctors later, they think the opening is at L3. L stands for lumbar (the lower poriton of the back) and 3 is the third vertebra down. Typically this area has nerves that connect to the baby's lower legs, knees, ankles, feet, bladdar, and bowel. Dr. Foody, the nuerologist, explained that we truly will not know the capabilities or limitations the baby will have until after it is delivered. He has seen cases of total limitation to using a wheelchair to some children running and playing soccer; we are hoping for the 2nd.

As of now, we do know that the baby will be delivered by C-section (as was Robby). Shortly after arriving it will be taken to NICU for stabiliation and prepped for surgery. The closure of the back is supposed to be done w/in 24 hours. One side affect that is very common is for the baby's head to swell with fluid "water" on the brain. If this occurs, the baby will need to have a shunt surgery. While we hope this isn't the case, only time will tell.

June brought on a mixture of events as well. I was introduced to several other parents of children with spina bifida (which have been wonderful in helping to answer questions about everyday life w/ kids w/ SB), exams, leaving school knowing that everything will be different from now on, etc.

Yes, life has been a whirlwind of events during the last several months. Having always been known for being prepared and organized, God has reassured us that maybe it's time for us to slow down a bit and enjoy each day as it happens. Please keep our family in your prayers.